Benchmarking in Inflammatory Bowel Disease: Lessons from Australia and New Zealand

Inflammatory bowel disease (IBD) is a complex chronic disease estimated to affect almost 1% of the Western population, where proactive care has largely replaced a reactive approach. Whilst there have also been great strides in new care models and therapies, care quality, and outcomes are poorly known, leaving us designing and delivering services without an effective feedback loop. Quality of care, guidelines, consensus statements, and standards will each be discussed, as a solid understanding of these concepts is essential. Assessing quality involves measuring the 3 core domains of structure, process, and outcomes. Benchmarking is an extension of quality assessment, which is recurrent or continuous and enables transparent, valid comparisons of quality between care sites. Assessment of QUALITY and BENCHMARKING are resource intensive unless processes are automated and use routinely collected data generated in the moments of care. Digital tools now provide realistic opportunities to make this affordable and sustainable, though concerns around privacy and security hamper solutions, whilst siloed data within institutions restrict comparative use. One novel solution to enable IBD benchmarking has been developed in Australia and New Zealand (ANZ). Crohn's Colitis Care (CCCare) is a cloud-based, IBD-specific EMR, now being used in routine care documentation at 22 sites across ANZ. De-identified data feed from CCCare's clinical module into a Clinical Quality Registry, in which audit, research, and benchmarking can be performed. The pathway from conception to implementation will be presented. Lessons learnt from the ANZ benchmarking journey will be discussed and suggestions for an effective global approach to IBD data will be proposed.